Mitchell's 5th Birthday

Mitchell's 4th Birthday

Mitchell's 3rd Birthday

Feb 2010

Thursday, April 21, 2011

Back at it

I'm not sure where the time is going, but our life has been very busy. I haven't done a good job keeping everyone updated--sorry! Mitchell is doing REALLY well. His mobility improves each day and his PT and OT are very impressed. His left knee still locks back, which affects his gait and steadiness. PTs don't quite know what to do since it's really a neurological issue. He is doing well with his chemo too. He has caught colds the week after his temodar the last few months, which is kind of annoying for him, but all in all it's not a big deal.

Our big news is we got to go on his Make-A-Wish trip this past week and it was so wonderful! We travel occasionally and I've felt the blues that come at the end of vacations before, but I have to say I was downright depressed leaving Florida. It was a magical time for our family, and I'm sure we'll go on more fun trips together, but this time was different because for a few days we all escaped from our responsibilities and worries and enjoyed each other. Plus, Make-A-Wish gave us a trip we could never buy. I appreciate what we got, but selfishly wanted more--just a few more days at least! Here is a sneak preview picture until I have time to post more.

Finally, I've been meaning to post a follow-up for a while to the previous post about Mitchell's conversation. I saw an interview with a gal who was severely burned in a plane crash. Her name is Stephanie Nielsen and she said that while she was unconscious, she had a vision and was given a choice. She said, "I was with somebody who told me that I could choose to live and have a hard life, you know, embarrassing at times and painful. Or, I could just stay there, and there's a lot of work to do there too, but I thought of my children and husband, and it was easy. An easy choice."

This quote struck me, because I've thought a lot about how Mitchell must have known and accepted this life's challenge before he came to earth and wondered if even now he knows. He may have a difficult life physically/intellectually, etc. but I think he's up for the challenge. He can do a lot of good here--we all need people like Mitchell in our lives. He always amazes me for so many reasons. Even simple things, like manners, are never forgotten. He had an accident on the airplane (he just woke up and was rushed onto the plane) and kept saying, "I'm sorry I had an accident. Thank you for cleaning me up." He's always doing things like that. When I think of what Mitchell's life might be like should he live, I worry it will be hard for him, but then the scripture in Isaiah always comes to my mind, "He was a man of sorrows, acquainted with grief...despised and rejected of men...the chastisement of His people was upon Him..." and I think that no matter what, the Lord knows who Mitchell is, what He needs, and what He will go through. He will never be left to do it alone, and no matter what people might say or do to him, Mitchell will be okay. Luckily he has a family who adores him. I told Chad I worry more about what I would do if anyone ever made fun of him! Kids can be so mean.

I'll try to update soon. We have another MRI in a month, so please remember to pray and/or fast for him. We have a lot of hope and faith that things will continue to go well.

How fun! I am grateful you got to go on such a wonderful trip together. I can't wait to see more pictures. Our Stake president has said he wished he would of done more family trips with just his own family because of the bonding that happens when the family is together, no one else. I am going to try and do this! As always you are in our prayers!

Mitchell's Story

Mitchell showed his first symptom April 12, 2010. He was putting his shoes on and looked up at me and I noticed his eyes track in opposite directions. Obviously that sent chills up my spine and I immediately began calling doctors and no one would see him or seemed to think it was a big deal. After it continued a few days and I insisted they see my child, we took him in and our pediatrician agreed something wasn't right. Several doctors later and multiple random diagnoses, we took him to Seattle Children's on April 16th where he was administered an MRI. That scan showed a small tumor that the drs thought was on the brainstem and when I continued to ask the hows/whys they told me not to worry.

I worried all summer long and into the fall until on November 10, 2010 he woke up gagging. I thought he must have the stomach flu and coddled him all day. Around lunchtime it was obvious something serious was wrong because his muscles were shaking and he couldn't walk. We had just had a check-up on November 8 and although we voiced concerns about his eyes drooping, the doctor came up with some strange reason. When we called him about the muscle weakness we were told to go immediately to Seattle Children's. That hour of preparation was one of the worst of our lives. We prayed and cried then left not knowing what awaited us in Seattle. An MRI revealed the tumor had tripled in size. Mitchell's muscle weakness worsened by the minute. In the next couple of days he wouldn't be able to walk at all or lift his left arm. Friday, November 12 he went in for a biopsy to hopefully know what kind of a tumor we were dealing with. Although inconclusive, enough was gathered to diagnose him with a high-grade brainstem glioma.

We began radiation December 6th and finished January 26th during which time he took small doses of temodar--a chemotherapy drug. From February 28th, 2011 until January 23, 2012 he was on a maintenance plan of temodar, irinotecan, and bevacuzimab.

Mitchell's symptoms returned a few months after we finished chemotherapy. They began with severe impulsive behavioral issues that no one could identify a cause for and Mitchell clearly felt bad about. We had some mixed MRI results in May and June, but by then it was clear the tumor was growing. Mitchell declined over the summer but fought hard for his time. He passed away peacefully Sept. 2, 2012 in his daddy's arms. We miss you Mitchell and love you...Always and forever...No matter what!